Jelly Bean's Journey

Scan cancelled and surgery scheduled

2011-02-28T19:16:00.002-06:00

Happily, the infamous lump disappeared prior to the scheduled scan date, so the doc agreed to postpone the scan and keep an eye on Liam's skull. He has a "void" in one area of his skull, which can be normal given his history. So, the doc is keeping an eye on it for a while to see if it closes. We are assuming the lump was another leak of cerebrospinal fluid that reabsorbed into his head. This has happened before.

In other news, we saw ENT today and will do a new set of tubes in Liam's ears and have his adenoids removed on March 30. We knew this was coming, so it's not a surprise. We postponed it for a while to see if his ears would improve on their own, but they aren't and he's not a happy camper with frequent ear pain, so we're moving forward.

Thank you so much for your many prayers!

In Christ,
Bill and Lisa

Firing up the blog again...unfortunately.

2011-02-16T18:03:00.003-06:00

We would appreciate your prayers for Liam. All was going swimmingly until we noticed a lump on his head on Saturday. By Monday, it had increased in size. We were worked into Dr. Kelly's office today (craniofacial doc) and he has ordered a CT scan as quickly as we can get it done (started insurance approvals today). He noted that it was odd and that the skull appeared to have a soft spot under the lump. It's not unusual for a 3 year old to have soft spots, but the lump is unusual. Most likely, we will discover this is an anomoly that is nothing to be concerned about, but we trust Dr. Kelly's opinion and are moving forward with the CT scan. I talked to his scheduler late today and she thinks it will be early next week before we can do the CT scan due to insurance approvals. Please pray all is well with our energetic little guy so he can continue to run races in his walker!

We are again reminded: Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air, they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any of you by worrying add a single day to your life? Matthew 6:25-27

In Christ,
Bill and Lisa

Casting for braces!

2010-08-08T23:32:00.002-05:00

I have my fair share of mom guilt for various things, but tomorrow takes the cake! Liam turns 3 tomorrow (woohoo!) and we're celebrating by having him casted for his leg braces. Well, not really: We're celebrating later with the cake and ice cream and gifts thing, but we do have the leg brace casting appointment RIGHT on his birthday. Great, eh? Friends tell me he won't know the difference. Hmmm...

I do take some solace in the fact that I really didn't have much choice of appointment times, because they had a cancellation. If I didn't take them up on this time, it was going to push it into September, so I snatched it while I could. At least it will only take an hour!

For those who have been asking, I should find out tomorrow when the actual braces will be in and ready for Liam to try. Please keep praying for smooth sailing! It was kind of dicey with insurance approvals there for a while, but persistance paid off once again.

In Christ,
Bill and Lisa

Braces, but not for his teeth!

2010-07-08T01:13:00.005-05:00

Last week, Lisa, Liam, and his physical therapist went to talk with the folks that made Liam's helmet about the difficulty Liam is having learning to walk. His foot placement is wrong with both feet, but especially with his right foot. It looks like he will need an ankle-high brace on his left foot and a mid-calf-high brace on his right foot to correct the placement of his feet as he walks. We are hopeful this will finally help him walk. He has a nifty little reverse walker that his physical therapist loaned us, and he LOVES the mobility it brings. However, as he started cruising around furniture and began using his reverse walker, we quickly realized he needs the braces to correct his foot placement.

So, the wheels are beginning to turn on the insurance approval. We again ask for everyone's prayers. We hope this process moves quickly, because we are anxious to see Liam take his first steps without needing to hang on to something! These will be custom-made braces, so they will be expensive and will take a while to be made.

Prayer Requests:

1. Thanksgiving that Liam is enjoying good health this summer!
2. That the insurance company will allow us to use our local prosthetic company the way we did with his helmet, because is sure is nice not to have to trot back and forth to Vandy constantly when an excellent local treatment provider is available.
3. That insurance will pay 100% of the cost of these braces.
4. That the approval process and construction of the braces goes quickly.

In Christ,
Bill and Lisa

Prayers for Baby Madison

2010-06-04T15:32:00.002-05:00

Liam is doing fantastic, which is why we never post any more! Our two biggest issues right now are his lack of speech (though he is picking up sign language pretty well) and the fact that he can't walk. He has a new reverse walker that he loves being in and we're looking into getting orthotics or braces on his legs to help him place his feet correctly.

Friends of ours are going to have Baby Madison on June 8 at Vandy. We'd appreciate your prayers for them, as Madison has spina bifida. Madison's parents are a wonderful Christian couple and we know they will be ok despite all the stress--we just wish they could experience Madison's birth without all the medical complications and the associated challenges.

In Christ,
Bill and Lisa

Liam's (hopefully) last surgery is behind us!

2010-01-26T20:32:00.002-06:00

Whew! It's been a long 2 1/2 years! We are happy to report that Liam no longer has a hole in his tummy! His surgery today went very well. It lasted about 45 minutes start to finish and he is recovering nicely. Thank you to all of you who kept him in your prayers! We hope his recovery is fast and pain-free. We had a bump in the road this afternoon when he refused pain meds and all liquids by mouth, but Mama and his babysitter seem to have resolved that issue by jointly tackling it. He is now resting comfortably and snuggling with Winnie-the-Pooh on the couch. Codeine is great stuff!

In Christ,
Bill and Lisa

Surgery on January 26

2010-01-24T19:51:00.003-06:00

Sad to report that Liam's feeding tube hole has not yet closed on its own, so it appears we'll be doing outpatient surgery on Tuesday. It should be a very fast surgery in terms of exposure to anesthesia, but all prayers are greatly appreciated.

A family at our church has been struggling for several weeks with their son's illness with Kawasaki Disease. Please pray for Baby Jack for recovery from this rare disease. It's been a long month for their entire family, and Baby Jack is experiencing cardiac complications right now.

Many thanks to our church family for so many expressions of support and concern this morning. You all make us smile and we appreciate that you help us face this (hopefully) final surgery with courage, knowing that so many of you are lifting our entire family in prayer.

In Christ,
Bill and Lisa

Happy, happy news!!

2010-01-06T10:53:00.006-06:00

We are very happy to announce that Liam is now tube-free for the first time since birth! We took him to Vandy yesterday to check into getting his feeding tube removed. They pulled the tube out right there in the office and said the hole might close on its own. He is scheduled for surgery on January 26 to close it surgically if needed because it's very rare for the hole to close on its own after being in place for two years. We would greatly appreciate your prayers for God to step in and show us all once again Who is really in charge!!

In Christ,
Bill and Lisa

Look to the Lord and His strength; seek His face always. Psalm 105:4

Some Christmas pics...

2009-12-23T17:28:00.001-06:00

Update on the CT scan

2009-12-23T17:26:00.002-06:00

We didn't end up needing the CT scan! We were really not wanting to do the scan, because it was more exposure to radiation and yet another procedure that needed to be done under anesthesia. One night while Bill and I were talking about it, Liam was sitting on Bill's lap playing. Bill felt for the lumps and told me they were gone! Sure enough, they had disappeared! Thank you so much for your prayers! God is great!!!

In Christ,
Bill and Lisa

2nd Birthday Pictures!!!!

2009-11-01T21:27:00.000-06:00

Found the cord thingy!!!

In Christ,
Bill and Lisa

What a fall!

2009-10-09T21:33:00.002-05:00

Whew! What a wild ride! Work really got hectic for Lisa in July and it's just now beginning to settle into a semblance of a normal routine. Sorry for the pause in posting--we appreciate those of you that check the blog regularly even when posting is a rare event.

Liam turned 2 on August 9. We had a great party and he enjoyed smooshing cake in his face this year. We'd love to post pictures but we can't find the cord that goes from the camera to the computer. We keep forgetting to check to see if Lisa left it at work and/or buy a new one. :( As soon as the planets align properly and we have a cord thingy, we'll post some pictures.

Liam passed his last swallow study with flying colors last week!! WOOHOOO! We will be tube free someday in the near future! We've been told that removing the feeding tube at this point will require a minor outpatient surgery. We're waiting until this winter when we have an ENT check his tonsils and adenoids before setting a surgery date; if he has to have his tonsils and adenoids out, we might as well combine the two surgeries and get a two-for-the-price-of-one deal again on anesthesia and the O.R. Besides, we are opposed to exposing Liam to even more anesthesia, so the more procedures we can combine into one, the better.

We have a CT scan scheduled for November 11 to see why Liam has strange lumps on his head. People don't notice them unless they are around him a lot, but there are some lumps. Dr. Kelly thinks it's a "not uncommon" complication from surgery that will resolve on its own, but wants to do a CT scan just to be sure he's not missing something.

We appreciate those of you who continue to pray for Liam and our entire family. We are so blessed to be surrounded by so many Christian friends and family members!

In Christ,
Bill and Lisa

Bummer of the week

2009-07-20T12:31:00.002-05:00

We were sad when we received notice last week that our favorite doc, Liam's cardiologist (sshhh-don't tell the other docs!), is leaving Vanderbilt Children's to start a private practice in Knoxville. Big, huge bummer. Dr. Michael Liske is the best!! We will miss him but wish him the very best in his new endeavors. We thank God that he was there to shepherd us through the worst of Liam's heart problems and feel very blessed that we benefitted from his expertise the past 2 1/2 years.

In Christ,
Bill and Lisa

Still doing great!

2009-07-03T06:27:00.002-05:00

Thanks for the cards, phone calls, e-mails, and Facebook messages to check on Liam! We're starting to fall behind on responding to each of them, but he's doing so well! We are continually amazed by God's power as we watch this little guy heal quickly despite ongoing heart issues and other health problems.

Liam's occupational therapist said yesterday that she already sees a big difference in his eye-hand coordination when he is attempting to accomplish tasks (such as putting shapes in a shape sorter, for example. He has definitely been babbling more in the past day, which we're taking as an indication that the tubes in his ears have improved his hearing, and therefore are already causing increased speech. His speech therapist noticed it yesterday, too.

He continues to take Tylenol or ibuprofen for pain and it's working. He seems quite comfortable and is scooting around on the floor playing with toys again. He has slept comfortable since day one at night, which has certainly been a blessing to his parents!!!

Next steps in Liam's health (aside from follow-up appointments with the three surgeons) will likely be the removal of the feeding tube and possibly the removal of his tonsils and adenoids (we're hoping to set an appointment with a different ENT who specializes in tonsils and adenoids rather than tubes soon). We hope to wait on both of these surgeries until next year and once again do them both at the same time.

Thank you all for your ongoing prayers and support!

In Christ,
Bill and Lisa

Mission accomplished!

2009-06-30T17:53:00.003-05:00

Liam had a great surgery experience yesterday (well, as great as these things can be, anyway!). The three surgeons were able to put the tubes in his ears, fix his lazy eyes, and circumcise him successfully. We went in at 6 for a 7:15 surgery. They started on time and were done by around 9:30. We were home by 1:30 p.m. He rested comfortably yesterday, slept the whole night straight through, and has been resting today as well. All is going well!

Thank you so much for your prayers! We feel very blessed to live in a country where we can easily access doctors who have the best training and resources and equally thankful that we have good insurance coverage.

Please pray that his recovery continues to go smoothly!

In Christ,

Bill and Lisa

Gearing up for Monday!

2009-06-25T11:29:00.002-05:00

Liam is still set to have three minor outpatient surgeries on June 29. For those who haven't visited the blog in a while, he is having them all at once to minimize his exposure to aneshesia for the year. The ENT is putting tubes in his ears because he is showing hearing loss due to chronic fluid (without chronic ear infections, thankfully) in his ears. We hope this results in higher rates of speech acquisition! The eye doc is going to fix his lazy eye (yahoo!), just in time for his two year pictures! At the same time, the little guy is going to be circumcised since the docs said there were more important things to focus on when he was born.

We would appreciate your prayers. While he is expected to come through it just fine, come home the same day, and have a very short recovery time for all three surgeries, no one wants their little boy going "under the knife," no matter how minor.

In Christ,
Bill and Lisa

How 'bout a little Mercy Me this morning?

2009-06-16T09:19:00.001-05:00

LOVE this! http://www.youtube.com/watch?v=e8HgAVenbUU

Surgery bumped to June 29!

2009-05-30T21:22:00.002-05:00

I'm still not sure I get why they did this, but we've been bumped to June 29 for surgery. It had something to do with booking the OR. Still all three in the same day, just earlier than originally planned. Actually, I'm glad we're doing it sooner--always nice to get this stuff over sooner rather than later! God is good...

Lisa

Spring Pics 09

2009-05-20T08:26:00.007-05:00

Pouty face while eating: A Liam Classic Face!

Planting flowers with Mom

Spring 09 Pics

2009-05-20T08:17:00.004-05:00

Easter Bunny Cake 09

Easter Morning 09

Such a cute smile!

Future Little Hoosier

Our Little Hoosier Man!

Surgery date is...

2009-05-19T10:07:00.002-05:00

July 20, pending the docs being able to reserve a second OR to assist with "flow" between surgeries, whatever that means. Sounds like a bunch of pampered docs to me! First up is ears, then eyes, then circumcision. All outpatient, so he'll come home yet that day, provided all goes as expected.

In Christ,
Bill and Lisa

Doc appointments

2009-05-04T11:37:00.002-05:00

Liam's doctor appointments last Wednesday went very well!

We were pleased that his skull surgeon cleared him from wearing another helmet for the next six months and remain optimistic that he won't ever need to wear another one! He was also cleared to sleep in his crib rather than in his car seat, a precaution that was being taken to ensure his skull continued to heal properly post-surgery.

His heart surgeon cleared him for the upcoming surgeries and did an echo, an EKG, and got pressures in both arms and legs. His pressures looked great, as did his echo. Dr. Liske said his EKG looked like an EKG of a normal child his age (!!!). His echo revealed that the ASD has closed (the ASD is the hole in his heart). The coarc repair continues to hold steady and his heart is growing normally. They will continue to monitor the bicuspid aortic valve and an area on the left side of his heart that continues to measure a little smaller than normal and has a ridge where one shouldn't be. So, all looks great!

Still no surgery date, so I guess we'll have to prompt somebody this week to get things moving. I will certainly keep you posted with a date as soon as I have one!

If I could draw your attention to one of the blogs on the right side of the page: Gavin has HLHS and had his third open heart surgery on April 22 to convert his heart to a two-chamber heart. Initially he was doing really well but suffered a set-back over the weekend. Please pray that he continues to recover and pray for strength for his family. They have encountered some unusual obstacles in that they traveled to California for the surgery so they are away from some of their usual support people in their lives. Additionally, the hospital they are in locked down at one point last week due to the Swine Flu epidemic. Gavin's mother was locked in Gavin's room and his father was locked out of the room. It has been a very difficult time for the entire family and though they are holding up well, I know they need all the prayers that you can offer up to God.

In Christ,
Lisa

"He who dwells in the shelter of the Most High will rest in the shadow of the Almighty." - Psalm 91:1

Long-awaited update

2009-03-26T09:53:00.002-05:00

Happy spring to all,

We've had a variety of appointments for our little Jelly Bean in recent weeks. I wanted to wait until yesterday's appointment was over before I added to the blog. Essentially, Liam is facing three surgeries this year and a possible surgery next year. All of these surgeries are minor. At this point, we're attempting to consolidate as many surgeries as we can to limit his exposure to anesthesia.

Liam is going to have tubes put in his ears to alleviate his hearing concerns. It is unclear right now if that accounts for his speech delays or if there is more going on. The ENT does believe that putting the tubes in should help accelerate his speech, though. Liam has had chronic fluid in his ears since birth, making it difficult for him to hear others make certain sounds. He doesn't get ear infections, thank goodness, but the fluid is a problem, and it is clearly not going away on its own. Additionally, he needs surgery to correct the position of his right eye, which looks inward. Patching did not resolve the issue, so now we're off to surgery. The ophthamologist doesn't believe he has poor vision, which is good news--he just needs surgery to correct the muscle that holds his right eye in place. Finally, the poor little guy had so much going on at birth and during his first year that he has never been circumcised. We are now in the process of setting a surgery date. We have one more doc to see in early April and then Lisa will start the process of coordinating her schedule with the OR schedule as well as the schedules of the three surgeons. We really need you to pray for us as we go through this process--it can be really frustrating to deal with egos of three surgeons at the same time!

The other surgery that we know is on the horizon, but realized yesterday it won't likely happen until next year, is an operation to close Liam's feeding tube hole. He does still have the tube, and we were hoping we would be cleared yesterday to go tube-free, but a swallow study yesterday showed that Liam is still aspirating on thin liquids. Until he is no longer aspirating, we don't want to remove that tube. We aren't using it much any more, but it's helpful to have it in place after surgeries and procedures, and we don't think anyone will green light us on removing it and closing the hole until he is aspiration-free. His next swallow study will be right around the time he turns two in August of this year.

Liam continues to struggle with learning to crawl. He is so close, and we keep expecting to walk into a room and see him crawling, but so far, it hasn't happened. He is able to turn himself all around, and he can be quite mobile in a very strange way, but still isn't crawling.

He continues to be the happiest and most easy-going little one ever born. He laughs a lot at his four year-old sister these days, and Sarah certainly loves the audience. We're enjoying getting outside more now that it is warming up, and will play in the dirt again this summer in our garden out back.

Lisa's new job continues to go well and she still loves the short minute drive to work. She took some time away from all things medical, including the blog, this winter to focus more time on family. It was a much-needed respite, and something for which we're sure you can all appreciate the need.

In Christ,
Bill & Lisa

Christmas 2008

2009-01-06T09:41:00.003-06:00

We still haven't transferred Cincinnati Christmas pics over from the old computer to the new one, and we have yet to download Indiana Christmas pics, but here are three sets of pictures to see. Liam's the star in the third set, on down the page--this is, after all, a blog about him...

In Christ,
Bill and Lisa

Sarah unwraps a gift.
Jami and Sarah help Liam play with his new penguin.

Jami and Sarah make ice cream from Play-Doh.

More Christmas pictures...

2009-01-06T09:31:00.004-06:00

Liam and Uncle Greg
Daddy and Sarah, decked out in her new tool set and toys.

Sarah's pile of toys.

The stockings were hung by the chimney with care...

Christmas tree 2008

Liam's Christmas 2008

2009-01-06T09:28:00.003-06:00

Liam under the tree on Christmas morning.
Liam opens his new tool set!
Liam and his new pile of toys.
Maybe he'll grow into it...someday.
All tuckered out from a day of Christmas festivities!

ABR test results

2008-12-30T10:29:00.002-06:00

We found out Liam has a mild hearing loss, but it is temporary and due to fluid in his ears. He never has ear infections, but has had chronic fluid in his ears for some time now. The docs are hypothesizing that this is one reason his speech is delayed. We are meeting with an ENT sometime in the new year to determine next steps but we really hope to avoid a surgery to put tubes in his ears. He's just been through so many surgeries, and the fluid will clear up and only cause speech delays, we hate to pursue it further. However, we'll consult with the experts and then make a decision. Based on this news and the recommendations that were made by the occupational therapist who did his feeding eval recently, Liam will be starting both speech and occupational therapy in the new year.

I tried to post Christmas pictures last night, but we got a new computer and I need help figuring out how to set up the e-mail account. Grr. I love technology, but trying to get everything set up on a new computer can be very frustrating!!

All the best to you and yours in the New Year!

In Christ,
Lisa

Happy Helmet Check News!

2008-12-15T14:32:00.002-06:00

We are very happy to announce that Liam was seen by Dr. K this a.m. who pronounced his head round enough for now. Well, he used doctor-type words that make it all sound more official, but the general gist is that we don't have to go back for 5 months and he can be helmet free for now. We'll see what he says in five months!

We are gearing up for the holidays around our house. Bill has done all of his holiday decorating outside but Lisa still doesn't even have the tree up inside. Actually, it's up, just not in the right place (Bill says it blocks our monument to stupidity--a.k.a. the too-big TV set we own) and is not yet decorated. We wonder if we'll ever get the Christmas cards mailed out this year. WHY do the days go by so quickly the older you get? Time is wasted on the young!! ;)

Liam is now sitting up on his own and Sarah is beginning to pick out words when they are written on a page! We're equally excited about both accomplishments! Wooohooo!

Next step for Liam: ABR (fancy hearing test done under sedation) at our beloved Children's on Friday. We'll post an update when we get the results!!

Thank you for all your prayers--don't stop praying for our little miracle!!

In Christ,
Bill and Lisa

At long last--another update!

2008-11-19T08:15:00.002-06:00

So sorry, folks! A friend e-mailed me asking me to update the blog, and I nearly had a stroke when I logged in this morning and realized how long it had been since I updated it! Once again, there is good reason, though! I started a new job as Director of Counseling Services on a small private university campus in our small town here. That means I'm driving 2 hours less per day. As an added bonus, I love the job (so far!). Anyway, the transition kept me busier than I had anticipated, and I should have posted a warning to all of you, but I didn't think about it.

Liam is doing wonderfully! He has been totally off all pain meds for quite some time and is happy, smiling, and loving life! The fluid builed-up is now completely gone, so his head is looking great. The best news is that at his follow-up appointment with the surgeon, he said Liam may not need another helmet! At $3000 per helmet, we were VERY excited to hear that! Besides, we like snuggling his little fuzzy noggin, and we can't do that if it's covered up with hard plastic. We'll see...

We continue to experiment with different things to get the steri-strips off his head. If anyone has any suggestions, we're happy to entertain any and all of them (well, I think we won't try the lighter fluid idea that one of Liam's uncles brought up!). So far we've tried the adhesive dissolver they gave us at the hospital, baby oil, and soaking them in water as often as he'll tolerate. He screams anytime you get anywhere near them. The surgeon says to wait it out and they'll just naturally fall off, which is what we're doing. Hard to be patient, though. We want them gone ASAP! Oh well. Small potatoes given what we've been through. Goo Gone, anyone? ;)

I need to get some Halloween pics posted. Ideally, this will happen prior to Thanksgving! ;) Liam went as the pumpkin that the Fairy Godmother turned into a coach. Guess what Sarah wanted to be...

Many, many, many thanks for the prayers you have offered and continue to offer, as well as the emotional support, cards, meals, and phone calls. We greatly appreciate all of the kindnesses extended to us over the past six weeks during this latest round of medical intervention.

What a journey of faith Liam's life has been so far!

"Indescribable, uncontainable,
You placed the stars in the sky and You know them by name.
You are amazing God
All powerful, untameable,
Awestruck we fall to our knees as we humbly proclaim
You are amazing God!'
-Chris Tomlin

In Christ,
Lisa (and Bill, of course!)

Update 10/20

2008-10-20T15:47:00.004-05:00

Little Man is doing great! He's almost back to goal calories and he is his happy self as long as he gets his pain medication on time. We're hoping to start weaning him off the Tylenol with codeine soon--we don't want him to have to enter a 12 step program at such a young age. I don't think they have detox or addictions programs for 14 month olds. ;)

He doesn't look nearly as bad as we thought he would at this stage of the game. He has some fluid build-up in the back of his head, which is kind of creepy, I have to admit--it definitely distends his head shape in a weird way. He still has bruising at his left eye, and there are some faint bruises on his forehead, but they are going away day by day. Sarah informs all of our visitors that, "Liam has an oval head right now, but it won't always be that way." Ahh, life with a three year old.

In Christ,
Bill and Lisa

And after a difficult 20 hours...

2008-10-15T10:45:00.002-05:00

we're going HOME!!!

I returned to Liam's room after publishing that last post to find chaos reigning supreme. It's pretty much stayed that way ever since but we still get to go home today (thank goodness!). I think we'll fare better at home at this point. Anyone who's been hospitalized for any length of time understands that!

Our internet is down at the house. Depending on how quickly AT & T gets on it, I may not be able to post for the next day or two. Feel free to call us if you're wondering how we are. I won't answer or will turn the phone off if I can't answer it or need some sleep.

Keep on praying!

In Christ,
Bill and Lisa

Update 10/14 at 11:30 AM CST

2008-10-14T11:28:00.002-05:00

Looks like we're going home tomorrow (maybe)! YAHOO!! Liam had a rough night last night. He had a tough time settling down to sleep and then woke at 3:30 and was awake for an hour. Hopefully he'll get more sleep tonight. Everything else looks good. They were talking about releasing him this morning but ultimately decided to keep him another day, which I was actually happy to hear. I need to escape for some time this afternoon to go spend some time preparing Sarah and the house for Liam's arrival back home.

Don't stop praying!!

In Christ,
Lisa (and Bill)

Update 10/13 at 4:05 PM CST

2008-10-13T16:07:00.003-05:00

Liam continues to improve with each passing day. They removed the drain tube from his head today, and while he fussed at them immediately after, he soon calmed down and has been himself ever since. He's enjoying a toy drum on loan from the Child Life team and his favorite rattles from home.

We hope we get to go home soon!

In Christ,
Bill and Lisa

Update 10/12 at 3:40 PM CST

2008-10-12T15:40:00.003-05:00

We have moved to a regular room on the post-surgical floor! YAHOOO! The drain tube in Liam's head is still in, along with 2 IVs, but other than that we are tube-free and monitor-free. Lisa happily held Liam for a full 90 minutes today. Both Mama and Liam were happy about that! He continues to do well, needing less pain medicine with each passing day. This afternoon he is able to be content when awake and even waved hello to his new nurses when he was moved. We anticipate they may be able to remove the drain tomorrow. Lisa had to go out to the car and get some toys for him to play with to keep him occupied, which is an excellent sign!

Keep praying!

In Christ,
Bill and Lisa

Update 10/11 9:35 PM CST

2008-10-11T21:34:00.002-05:00

All continues to go very well. They are stepping him down bit by bit from the pain meds and sedatives, so he's more restless now than he was earlier today. We should be moved out of the PCCU tomorrow if we continue down the same path of recovery. YAHOO!

Sarah is doing better today than she was yesterday, too.

Thank you for your ongoing prayers!

In Christ,
Bill and Lisa

Update 10/11 at 1:15 PM CST

2008-10-11T13:13:00.002-05:00

Liam continues to do very well. They were able to take out his arterial line this morning and his eyes have started to open a bit. We're looking at being released to a regular room either late today or early tomorrow depending on how he does, what beds are available upstairs, and how crowded the PCCU gets. I think neurosurgery would be fine if he was released to a regular floor anytime now. Plastics wants him to stay in the PCCU until his eyes are open and they'd like the drain to come out of his head before they send him up, as well. We'll see who wins. Pain control is going well and we've been blessed with excellent nurses, so we have a lot to be thankful for right now.

Keep praying!

In Christ,
Bill and Lisa

Update 10/10 at 9:15 PM CST

2008-10-10T21:16:00.003-05:00

"Everything is going just as well as it possibly could be!" said the neurosurgeon on rounds tonight. Can't ask for better than that! He has had three feedings and is now up to goal volume of formula. They were able to remove the catheter tonight (yahoo!) which made him madder than a wet hen for a few minutes but then he was fine. He's just snoozing away on his cocktail of meds. They are now down to alternating morphine and ativan every 5-6 hours, so that's great, too. His night nurse mentioned he is now considered PCCU Transition case, so I'm hoping we'll get to move to a regular room late tomorrow or early Sunday. We'll wait and see how tonight and tomorrow go. His eyes are swollen shut now, but he still isn't nearly as swollen as we expected. He should get to peak swelling tomorrow afternoon and then the swelling will begin to decrease. He has to be able to open his eyes again and they have to be able to remove the drain in his head before he can move to a regular room.

Please keep praying! A special prayer request is to please pray for peace for Sarah--tonight it looked like she's starting to have a tough time with the disruption in her routine and she told me she told me she is "really worried" about Liam despite our reassurances about how well he's doing.

In Christ,
Bill and Lisa

Update 10/10 11:35 AM CST

2008-10-10T11:34:00.002-05:00

Liam is doing great! They extubated him at 1 AM ("in the morning" means a totally different thing in hospitals--I always forget that!) with fantastic results. We hit a rough patch around 6 AM trying to find the right cocktail of pain meds that would relieve pain and sedate him without decreasing his heart rate and breathing too much. The right mix appears to be morphine, tylenol with codeine, and ativan. Needless to say, he's knocked out right now.

We've received clearance to start feeding him today and they are going to take out his catheter later, too. He isn't too swollen yet, but they expect that to worsen over the next 48 hours. He can't open his eyes at this point and they are starting to bruise, which is all perfectly normal.

Thanks for the many prayers and good wishes! We know we are being prayed for because we are in good spirits and still doing well despite the sleep deprivation!

In Christ,
Bill and Lisa

Update 10/9 at 8 PM

2008-10-09T19:58:00.002-05:00

I need to type this one fast because shift change on the PCCU is almost over, which means I can go back to Liam soon. Bill and I have been out for dinner for the past couple of hours so I'll be glad to get back to Liam.

We FINALLY were able to see him around 6 PM for a brief period of time. They were settling him into his room, so we didn't stay long. Just long enough to kiss his feet (it's the only visible part of him that doesn't have a tube going in or coming out right now) and say hello. He was zonked out, so I don't know that he knew we were there. He has reportedly been awake once and fussed at them for messing with him, so they gave him pain meds to make him comfortable.

He failed the first attempt at extubation but that's fairly common at this stage, so no one worry about that. We'll try again in the morning.

I've been up since 4 a.m., so I'm wiped out and would like to get some sleep. I'll post as I am able tomorrow, so keep checking for updates!

In Christ,
Lisa (& Bill)

Post Surgical Update 10/9 3:35 PM CST

2008-10-09T15:35:00.003-05:00

Liam is out of surgery. We talked with the surgeon a few minutes ago and then headed to the computers to update the blog, etc. because we can see him for another hour or so. So far, so good--he has come through with flying colors. He'll spend some time in the PACU (recovery) and then we'll head up to the PICU. Right now we're just waiting for him to wake up. They were planning to try to extubate and get him off the vent immediately, but they warned us not to be surprised if he heads to PICU still on the vent because the babies who have had this surgery often need to stay intubated over night (the heavy anesthesia required supresses breathing pretty significantly). If he fails the first try, they won't try again until tomorrow morning. He had to have 2 1/2 units of blood and will likely need more tomorrow, so thank you to all of you blood donors out there!

We continue to do well--we even caught a small nap in the waiting area after lunch today.

In Christ,
Bill and Lisa

Update: 10/9 at 1:25 CST

2008-10-09T13:21:00.004-05:00

One of the surgical team members just called out to say Liam is doing well and the doc continues to operate. They took him back to the O.R. at 9:10 a.m., they opened at 11:05 a.m. I think they time it from the point at which they take him from us, which would be the 9 AM time.

We're doing fine. We just ate some lunch and we're settling in for the afternoon. Joe from church came by this morning and stayed for a long time, which was really nice. It was a welcome distraction chatting with him!

More later...

In Christ,
Bill and Lisa

He's in the O.R. now...

2008-10-09T09:58:00.002-05:00

So we showed up at the hospital this morning appropriately sleep deprived and were told that insurance hadn't pre-authorized the surgery. Great. I sat there having all kinds of cognitive distortions (sorry folks, but my counselor friends will love that one!) until I just started praying that God's will be done and that He give us peace to accept whatever new plan we developed. A few minutes after I began praying, we got the news that it turned out that the doc's office hadn't made the final call to the hospital insurance office to give them the info that the insurance issue had been resolved successfully. I later asked the surgical team that was milling around if they took chickens for payment. Surgeons just don't have a very good sense of humor, you know? Maybe I should have offered my Civic Hybrid instead. I hear that's a hot ticket item these days. ;)

Therefore, we are a little behind schedule. He went in at 9:10 a.m. and we are now being told to expect a 6-7 hour surgery (I'm no longer sure who told me it would be 3-4 hours, but I don't think I just dreamed that up!). I'll post updates as I'm able today and in the coming week.

In Christ,
Lisa (and Bill, too, of course!)

Skull surgery date has been set

2008-09-25T10:22:00.002-05:00

Liam will have craniosynostosis (skull) surgery on 10/9. This news shouldn't come as too much of a shock to anyone who has been keeping up with Liam using the blog, e-mail, phone, or whatever other method you're using these days (such as good ol' face-to-face conversation!). However, the timing has caught us off guard (much sooner than anticipated), so we're moving very quickly to get as much info out as soon as possible.

Liam will be in the hospital for a week (most of that will be in the PICU), then home for three additional weeks after. If there are no complications, Liam should be medically stable on discharge from the hospital and through the worst of his recovery when he comes home. At that point, he will not be able to be around lots of small (rowdy & germy) children, so he'll need to be at home laying around and eating bon-bons (just kidding on the bon-bons thing) as he completes his recovery.

The surgery sounds horrific, but do please keep in mind that many children have been through far worse surgeries during their short lives. Bear in mind that Lisa (who does not have an R.N. or M.D. degree, though she's feeling like she should have earned one by now) is about to translate a lot of medical jargon into "cornbread English," so something may get confused in the translation, but here goes: They will open Liam skull, move the front of the skull forward, and place a titanium plate over part of the opening with dissolvable screws. This re-opens his soft spot that fused in utero but actually should not have closed until he was 6 months old. Opening this area will allow his brain to grow, will bring his forehead forward, and will correct the eye socket problems he's been experiencing. Without the surgery, he would have life-long serious eye development problems and could potentially face further brain development problems. Over time, the skull bones will grow back together around the plate, fusing the soft spot. We anticipate a 3 month developmental delay with Liam following this surgery. He will need to have another helmet casted after this surgery and will be in the new helmet for a while following surgery to ensure proper healing and that his head continues to grow appropriately.

Bill and Lisa are actually doing ok—we’ve had 7 months to mentally prepare ourselves for this. The timing has caught us off-guard, in that we were tentatively planning this for early December, so here are some immediate prayer requests:

1. Praise and thanksgiving that God has provided such an excellent hospital and surgeon in our own backyard.
2. Praise and thanksgiving that we have the insurance needed to provide fantastic care for Liam.
3. Praise and thanksgiving that we have family, friends, and a church family who offer us support and prayers every day.
4. Praise and thanksgiving that we are facing SKULL surgery, not BRAIN surgery.
5. For Liam to have an easy surgery and recovery with no complications and as little pain as possible.
6. For God to guide the hands of the surgeon and his associates, the nurses, and the anesthesiologist during the surgery and recovery.
7. For Liam to extubate after surgery without a problem.
8. For God to continue to strengthen our family and help us "roll with the punches" (and thanksgiving that he is strengthening us to do that even as I write this!)
9. For God to give us patience to accept His timing in all matters surrounding our family at this time.

"I have set the Lord always before me. Because He is at my right hand, I will not be shaken." Psalm 16:8

"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." John 9:1-3

In Christ,
Bill and Lisa

Big month for Liam!!

2008-09-04T13:27:00.002-05:00

WOW! August proved to be a big month for Liam, as you can see from the pics above! He is sporting his birthday stickers on his helmet and showing off his new cup-holding skills. Yes, indeed, we are WEANING him from the TUBE!!!!!!!!!!!!!!!! It's a slow process, and right now we can only feed him either formula thickened with rice cereal from an open cup or baby food (which he's been able to eat for the past six months). However, we are so happy to see him drink from a cup!!

He turned one on August 9, and we discovered he does not like icing or cake, especially when it is on his face. Made for a rather boring first birthday party, but it was such a joy to see him turn one that we really didn't care about the cake-on-the-face thing.

Chris Rice, a favorite Christian recording artist, sings a song called "Life Means So Much." It's one of Lisa's favorites:

"Teach us to count the days
Teach us to make the days count
Lead us in better ways
That somehow our souls forgot
Life means so much"

May we always make Liam's days count!

In Christ,
Bill and Lisa

Great echo results!!

2008-08-05T14:06:00.003-05:00

We are THRILLED to announce Liam's most recent echo results!! We met with Liam's cardiologist on July 23 but (once again) Lisa is slow about getting the word out. So, here you go:

1. The ASD (hole in his heart) appears to have closed on its own. We'll do a repeat echo in 9 months and they'll confirm this then.
2. The aortic root dilitation (area we feared was developing into an aneurysm) that was moderately enlarged in March appeared to only be mildly enlarged in this echo. So, no meds and no surgery needed yet.
3. The cardiologist said, "OK, so I'll give you a 50-50 chance that you're looking at one additional heart surgery before age 18."

WOOOOOOOOOOOOOHOOOOOOOOOOOOOOO! You have no idea what terrific news that is to two parents who started down this road in April 2007 looking at an HLHS diagnosis. ONE surgery? In the next 17 YEARS? 50-50 chance?

THANK YOU, GOD. So many prayers answered! And did you catch that we don't have to go back to the cardiologist for NINE MONTHS??!!??!!

"Who among the gods is like you, O Lord? Who is like you—majestic in holiness, awesome in glory, working wonders?" Exodus 15:11

So, we're still looking at a possible skull surgery this fall or winter. We take it one month at a time, and no, I don't have any idea when we'll get the final word. All the docs involved with Liam's care defer to the skull doc for his opinion on this issue, so we have decided to do the same.

Most recently, the ophthamologist saw Liam last week and determined he has a problem with his right eye. I can't pronounce it nor can I spell it, so I won't even try. It doesn't really matter. What does matter is that he will probably need a minor outpatient eye surgery at some point down the road (after the skull surgery, if and when he has that). For now, he has a lazy right eye and we're going to patch the left one for 4 hours per day to see if we can strengthen the right eye.

A patch and a helmet. We're considering having a pirate's hat affixed to the top of the helmet to give him the look of a pirate. What do you think?

Liam turns one on Saturday. We're considering the words from his cardiologist to be God's early birthday gift to Liam.

We bid a very sad farewell to Bill's mother on July 18. Thank you so much to those of you who have surrounded our family with your prayers, flowers, memorial gifts, cards, and love since she became ill earlier this year. To say she will be missed is such an understatement.

In Christ,
Bill and Lisa

New pics and a long-awaited update!

2008-06-11T09:17:00.002-05:00

Sorry, folks. What a crazy spring it's been!

Above you can see Bill with the kiddos at a picnic in May. Liam is sporting his helmet, which is old news by now, but the only people who have seen him in it are those who see us regularly. The other two pictures are Liam at school this week, painting for the first time. Just overlook
the pink t-shirt, because they throw those on the kids to keep them from painting all over their clothes--no, we don't dress Liam in pink.

Liam can roll over front to back and vice versa, though he doesn't do it very often. He can sort of sit up now, and we're working on crawling (he can scoot around a bit) and helping him learn to put weight on his legs. He's a happy child who loves to smile and laugh. Can you believe he's still toothless at 10 months?! Good grief! Where are those teeth?

We're still waiting for the helmet to do its job and we're watching his heart closely. No update on the skull surgery, other than that the doc was a bit more hopeful the last time we chatted about the potential surgery. In March we learned Liam may be developing an aneurysm in his heart. We'll get an update on that in July. Please pray that the area affected hasn't grown and that if it has, medication will resolve the issue. Both doctors have told us to be concerned but not to worry about these things yet, so that's what we endeavor to do on a daily basis.

I got behind on scheduling doc appointments, but we hope to have the next swallow study date within the next week. It's funny that the feeding tube has become such a non-issue. The only problem it creates is when we need someone to watch him--then we have to find someone who is trained (or at least comfortable learning) to feed him using the tube. Many, many thanks to our friends Heather, Melissa, and Candice for all the hours they have put in caring for Liam as well as Sarah, all three often refuse payment of any type.

I found myself in a blue funk this spring--everything seemed to catch up with me all at once. Work has been incredibly stressful (God's way of keeping me distracted from worrying?) and there are always the niggling fears about Liam working away at the back of my head. Thankfully, Bill earned the husband of the year award for being so supportive, and many family members, friends, and colleagues were there to show the love of Christ through their actions and words of wisdom. I always find Psalm 46 a comfort to read. It is one of my favorites--I've probably quoted it on this blog before:

"God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. Selah There is a river whose streams make glad the city of God, the holy place where the Most High dwells. God is within her, she will not fall; God will help her at break of day. Nations are in uproar, kingdoms fall; he lifts his voice, the earth melts. The LORD Almighty is with us; the God of Jacob is our fortress. Selah Come and see the works of the LORD, the desolations he has brought on the earth. He makes wars cease to the ends of the earth; he breaks the bow and shatters the spear, he burns the shields with fire. 'Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.' The LORD Almighty is with us; the God of Jacob is our fortress. Selah"

We all need to be still and know that God is God, but at certain times we need to do that with greater urgency and frequency. So, I took a break from blogging and let God push me once again out of my comfort zone, into uncharted territory, and am now reaping the benefits of following Him there. Alright, to be completely truthful about it, it was more like God dragged me kicking and screaming out of my comfort zone. ;)

Hopefully things will be slower now that we've reached the lazy hazy days of summer and I'll be able to keep up with this blog better!

In Christ,
Lisa

Isaiah 42:16

2008-02-24T21:03:00.000-06:00

"I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them."

There's good news and then there's bad news...

2008-02-22T22:40:00.004-06:00

Celebrating that all good news is a gift from God, we'll share the good news first: Liam passed his swallow study on February 18 with solids with flying colors! So, how does a mother record that in the baby book? "First food: Applesauce with barium, 2/18/08--loved it! Couldn't get enough! In fact, you fussed ardently when the spoon was removed from your mouth each and every time!" I don't know--something is just WRONG with that, don't you think? He is still aspirating on liquids, so we'll continue to use the feeding tube for formula for now. Gwen, his speech therapist, wants to repeat the swallow study at 9 months with liquids from a cup. He just gulps down the formula from a bottle--it's almost like he has no idea that he can slow down and still get enough eventually. He ends up overwhelming his swallow muscles in his throat and can't swallow successfully. So, news bulletin for the week: Liam loves his applesauce. ;)

OK, so the bad news does seem exceptionally bad, but we'll have to qualify that by noting that Lisa was so shocked by the news that she lost all capacity for intelligent thought for the duration of the appointment. It could be that this isn't nearly as awful as it sounds (denial, anyone?). That said, it seems quite likely that Liam will need a surgery in a few months to separate 2 plates in his skull that fused too soon. We were having him evaluated for a helmet (he has a pronounced flat spot on the back of his head that is leading the other side of the back of his head to protrude outward quite significantly), and everyone seemed to be indicating that it was a foregone conclusion that he'd need a helmet. Fine, we were were prepared for that (no big deal--so he'll look like he is the child of overzealous football fan parents).

However, when Lisa got to the appointment all prepared to hear "Well, Liam needs a helmet," she heard instead, "Well, your son has two problems, and a helmet is only likely to fix one of them. Surgery will be required to fix the other one." The 2 plates in question are located in the front and on top of his head (we think). This would be a good time to point out that everything that the doctor said after a certain point in this conversation started sounding like the adults in Charlie Brown cartoons (waahwaahwaah); therefore, Lisa just asked the surgeon to stop talking as she wasn't absorbing anything being said anyway. We should also note that Bill was home caring for Sarah, who was quite ill that day.

In any event, Liam will get a helmet, which should almost totally reshape the back of his head and gives him a 2-3% chance of avoiding the skull surgery to separate the plates. The helmet has a very small chance (note: 100% if God decides to provide His healing touch!) of allowing the forehead to open up and get the space it needs for his brain to continue to develop. Without that space, Liam will suffer eye development problems and brain development problems, making the surgery necessary. There was some comment made about titanium plates and dissolvable screws, but we'll have to get the details about that at a later date. For now, we will concentrate on getting the helmet made for Liam and we'll talk to Dr. Kelly at Vandy in greater detail later about the surgery details.

We suspect it goes without saying that we would greatly appreciate everyone's ongoing prayers for Liam and for our entire family as we face this next obstacle. Prayers for complete healing, financial resources, and (most of all) strength to accept God's will for all of our lives would be most appreciated.

In Christ,
Bill and Lisa

P.S. Liam has started to chuckle!! He especially enjoys his mother's pre-shower Saturday morning "crazy hair," as big sister Sarah refers to it!! ;)

Follow up appt with surgeon...

2008-01-18T08:41:00.001-06:00

Liam passed his follow up appointment with the feeding tube surgeon with flying colors! He weighed in at 12 lb 10 oz that day, which is fantastic. As you can see from the picture, he's really filling out! It's nice to see the round cheeks (with no NG tube or tape on them!!!), don't you think. Sorry the pic is so small--we aren't technologically savvy enough to know how to make it bigger, nor do we have the time to mess with it right now.

His physical therapist is also pleased with his progress. We are working on coaxing him into rolling over. Liam is babbling a whole lot right now--he loves to talk to us!

The next big thing for Liam is a 3-D head CT at the end of this month to determine if he needs a helmet to correct a flat spot on one side of his head (do heads have sides?). Please pray he doesn't have to have one. However, if he does have to have one, we hope and pray it won't take long to correct the problem.

Please don't take the lack of posts as an indication that the need for ongoing prayers has decreased. Lisa has been extraordinarily busy since returning to work following her maternity leave, and the blog has suffered as a result.

In Christ,
Bill and Lisa

Long past due pics from the fall...

2007-12-12T09:56:00.001-06:00

Sorry for the delay in posting these pics! I know, I know--I should be posting November and December pictures!! Thought you might like to see Halloween pics first. Hopefully I'll get Thanksgiving and Christmas pictures up in the next month. It's easier now that I'm back at work and have access to a better computer (I love my Mac!!).

I'm entitling the top picture, "If only magic wands worked!!" As you can see, Liam was not impressed with Halloween. But he sure does have a cute sleeper on, eh?

In Christ,
Lisa

We're home!!!!!!

2007-12-08T19:07:00.000-06:00

Woooooooooohooooooooooooooo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And have I mentioned how excellent the cardiology nurses are at Vandy lately???

Happy to be home as of around 4 p.m. today!!! Liam is doing great with his new feeding tube, and it sure is nice to see him without a tube down his nose!!

In Christ,
Bill and Lisa

WHEW!!!

2007-12-07T18:56:00.001-06:00

WHAT A DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Sorry I couldn't post a message before now, but I couldn't get away to do it sooner than this. It's been an extremely chaotic two days.

First, Liam has a brand spankin' new feeding tube, so he's the envy of all the other aspirating babies at the hospital now. ;)

I have never been in a hospital that was so swamped. We were bumped to a 2 p.m. surgery slot yesterday and then didn't actually go to the OR until after 4. Consequently, we couldn't get a bed last night so we spent the night in a holding room in the surgery ward. It was very weird. We were assured we would get a bed this morning. It's now 7 p.m. and we were JUST moved to the cardiology floor a few minutes ago, 15 minutes before the surgery unit closed for the weekend. I was getting nervous that we were going to be in a broom closet over night, but we have a lovely room and (THANK YOU, GOD!!!) favorite nurses we actually know from our last hospital stay. Even more remarkably, they remembered Liam and were happy to see him again. Either that or they should have careers as actresses instead of nurses.

Yesterday, Liam's surgery went according to plan (except for the timing snafu) and he came off the ventilator immediately after surgery. Yahoo!!! He did great in the recovery room. He did have a very rough night until Mama got quite stubborn with the doc and insisted that he give him the appropriate type of pain meds. Can you imagine wanting to relieve post-surgery pain in an infant with only Tylenol? Duh.

Today has been an extraordinarily difficult day. I am discovering that it's best to have cardiology nurses take care of cardiology babies, because if anything unusual happens with a cardiology baby's heart or respiratory rate, non-cardiology nurses tend to get quite anxious. When that happens, Mama gets nervous, too. Liam's heart rate and respiratory rate have been dropping intermitently all day, which was worrying his nurse downstairs to no end. Cardiology was called for a consult and pronounced him fit as a fiddle, but they moved him to the cardiology floor so his nursing would be more specialized. This makes Mama exceedingly happy.

We were supposed to be discharged today but they were so busy downstairs that they didn't get his feeds started on time. Consequently, he can't go home until he proves his new tube works. So far so good--we're up to 60 mL feeds now and he usually eats 78 mL at a time, so we're nearly there. We're hoping for a fairly early discharge tomorrow. We'll see how that works out. Please pray we get to go home ASAP. We're ready to be out of here!

More when possible...

In Christ,
Bill and Lisa

G-tube surgery info...

2007-12-01T21:09:00.000-06:00

Sorry--once again, time got away from us. It's hard to keep up with this blog in the midst of a whirlwind of doc appts!

Liam is set for G-tube surgery on December 6, so please keep him in your prayers during the upcoming week. It is hard to send him off for yet another surgery, but we know it's for the best. Please pray that he will extubate successfully this time--last time we had a terrible time trying to get him off the ventilator! I'll post an update after surgery on Thursday, and don't be shocked if you read he's in the PICU. They may decide to send him to PICU for close observation due the problems coming off the vent last time and his cardiac problems. It should be a one-hour surgery and just an overnight stay in the hospital, provided all goes according to plan.

He sure is a sweetie! He FINALLY smiled for the first time on November 17 at Momma. She sure was glad to see that goofy grin, and she felt like she deserved it for spending all those hours on the silly breast pump for the little guy! ;) He has a GORGEOUS smile!! Our camera is ultra-slow, so we haven't caught it on film just yet....

He's doing better holding his head up, but it's slow going. Because he won't be able to do tummy time for quite some time after the surgery, we expect it to be a while before he gets really good at holding his head up.

That's about it for the news for now. We'll keep you posted this coming week with new developments!

In Christ,
Bill and Lisa

Swallow study results are in...

2007-11-09T10:37:00.000-06:00

While Liam showed some improvement on his swallow study done this past Wednesday, he is still aspirating about 12% of his feeds. They called in an ear, nose, and throat specialist to veiw the tapes of the study and he concurred with a recommendation to place a G-tube directly into Liam's stomach for feeding. They will repeat the swallow study in 2 months.

Needless to say, this is upsetting news. We were quite hopeful after leaving the study on Wednesday that we would be moving toward less dependence on tube feeding. Seems that's not the case for now.

In Christ,
Bill and Lisa

Echo results are in...

2007-10-31T21:46:00.000-05:00

We are so happy to report GOOD news!! The hole in Liam's heart has started to close, going from "moderate" to "small" in the past 2 months. His coarc repair continues to hold steady, and the narrow area in his aortic arch that they have been monitoring has widened. The bicuspid valve is functioning just fine for now, and the small area of his heart that they have been watching (subaortic something or other) is continuing to grow. The gradients looked good, and the pressures in his lungs were good. His blood pressures on all four extremeties were fine. So, all things considered, things are looking fantastic in his heart for the time being. We don't have to see the cardiologist again until March '08.

The only concern Dr. Liske expressed was the low weight gain. We go for another swallow study next Wednesday. It sure would be nice to be able to feed Liam like healthy babies are fed!!

Please pray that Liam is not aspirating any more when they do the swallow study next week, and don't forget to send up many, many prayers of thanks and praise to God for the healing we've seen in Liam's heart so far!

Happy Halloween! We'll post our pumpkin patch photos and pics from Halloween ASAP...

In Christ,
Bill and Lisa

Drumroll, please!

2007-10-27T14:44:00.000-05:00

The long-awaited Oct 31 echocardiogram is almost here. We would appreciate all your prayers for our little Jelly Bean this week as we get a birds-eye view of what's going on with his heart right now. Please pray that the coarc repair is holding steady, the valve looks good, and (most importantly) that the ASD (fancy term for hole in his heart) is closing.

We continue to battle feeding issues, and were able to get a swallow study set for Nov 7 to see if there has been any improvement. You have no idea how happy we would be to see Liam free of his NG tube. We're starting to see the long-term effects of him being dependent on an NG tube for so long, and we really want to get rid of it as soon as possible.

The new pics above (and sorry for the text problems) are Liam on the beach in Florida, hanging out with his ever-present paci, and Liam getting warm after a bath this past week.

In Christ,
Bill and Lisa

Swallow study results from yesterday...

2007-10-09T08:06:00.000-05:00

Hi everyone! I logged in this morning and was stunned to see that I haven't posted anything since 9/21. Time got away from me!! Sorry about that. We took a trip to Destin, Florida last week and had a WONDERFUL time playing in the waves and digging in the sand. Liam enjoyed the trip, too. He enjoyed taking naps on the beach under the umbrella while everyone else played. I'll post some new pictures as soon as I can.

Liam repeated the swallow study yesterday. We were really disappointed with the results, which showed he continues to aspirate fluid into his lungs. The speech therapist said he will have to continue with the NG tube feedings for another 8 weeks. They don't want to subject him to more radiation by testing him sooner than that (Liam has had a ton of X-rays already in his short life). She indicated that 90% of cardiac babies' feeding issues resolve on their own. He did seem to be able to drink longer before he aspirated this time, which is good. He sucks to rapidly and vigorously and gets overwhelmed with the fluid, so we are supposed to start giving him 5 mL of fluid by mouth one time per day and work with him in a specific way (I won't bore you with the details) to try to get him to slow down. We were also given permission to breast feed him twice a day for 5 minutes each time just to try to ease the transition to breast feeding, which will hopefully happen in 8 weeks.

Yesterday was a rough day, because we were so hopeful that Liam could come off the tube. Emotionally, it continues to be very difficult to constantly have to retape his tube to his cheek and put the tube down his nose and throat when it comes out. We know he finds the entire process irritating, as well. Add to that the entire pumping process for me, and you can well imagine how sick and tired we are of "feeding issues," regardless of how common they are with cardiac babies.

After the test, I was feeling the need for a spiritual uplift, so I went to a Christian bookstore to poke around. I just happened to open a book to the story about Jesus healing the blind man:

"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." (John 9:1-3)

Funny how God reminds us of things at the most opportune moments...

In Christ,
Bill and Lisa

Update and a few pics...

2007-09-21T10:01:00.000-05:00

Hi all! We went to Liam's pediatrician yesterday, and he weighed in at 7 lb 13 oz. He is doing well and growing a lot. He has started to interact more with us, which is so nice! Here are a few pictures from the last week or so.

In the top picture, Liam pulled his tube out, so Mom took the opportunity to snap a quick picture of him. Of course, then he was grumpy, so the only way Mom could get a good pic was to stick his paci in his mouth. Figures.

In the other two pics, he is hanging out in his boppy and his swing.

Enjoy!

In Christ,

Bill and Lisa

PICTURES!! FINALLY!!

2007-09-12T13:43:00.000-05:00

These photos were all taken either in the final days in the hospital or within a few days of arriving home (sorry, haven't downloaded the most recent pics from the camera yet).

From the top:

1 and 2: Liam hanging out in his pack and play at home. Note the preemie clothes, which fit much better than his coming home outfit, which was newborn size!

3: Grandma feeding Liam a bottle in the hospital.

4 and 5: Sarah meeting Liam in person for the first time on the cardiac unit. She saw him for about 30 seconds outside the OR as they whisked him off to the NICU, but she didn't get to interact with him that time.

6: Liam in his car seat, ready to come home from the hospital. As you can see, he was a peanut. Yes, the poor boy's pants are up to his armpits, and still hang off his legs. His newborn clothes did not fit, and we had to go out and buy some preemie outfits. Thankfully, he is now in 5-8 lb newborn sizes.

7: Sarah gets to hold her baby brother for the first time.

Results of swallow study

2007-09-12T13:39:00.000-05:00

Liam is aspirating milk into his lungs when he feeds, which means we have to stop feeding him by mouth for 3 weeks and switch to only NG tube feedings for the time being. The speech therapist who tested him says this often happens with cardiac babies or preemies, and it's typically a growth issue that resolves itself fairly quickly. He will be retested in 3 weeks to see if the problem has resolved itself. If he aspirates his feedings into his lungs, he will likely develop pneumonia, which (obviously) would be very dangerous for a baby with heart problems.

We are disappointed to be going backward once again, but hopefully he'll grow out of this problem over the next few weeks and we can resume bottle feeds with better results than we've been having.

In Christ,
Bill and Lisa

Ongoing feeding problems...

2007-09-08T18:23:00.000-05:00

We continue to watch Liam struggle with feeding issues. He just can't seem to get a whole bottle down. Actually, I think we'd be happy if he could get even half a bottle down consistently these days! The feeding specialist (i.e., a speech therapist) decided to order a barium swallow study for this next week so we can get a better idea of what's going on. They will put him in a car seat and have him drink a bottle of barium solution (honestly, would you drink that if it was offered?). ; We trust that the specialists know what they're doing even if it sounds disgusting to us.

Other than that, Liam is doing well. He is getting more alert each day and will now wake for feedings at night, so Lisa doesn't have to set an alarm to get up to feed him. We are very happy that he'll wake us up now! That may sound crazy, but it's just nice to see him do normal baby things for a change!

Will update you when we have the results of the swallow study next week. Please pray this is a minor thing that can be corrected easily.

In Christ,
Bill and Lisa

Sorry it's been so long since the last update!

2007-09-01T22:28:00.000-05:00

Anyone who has spent any time at all with a newborn knows that those little people have a way of taking up an extraordinary amount of time! Add to that a jealous little 2 year old sister, NG feedings, pumping, and multiple doctor appointments, and you can understand why it's been so long since the last update.

Liam is gaining weight! Yahoo! At the cardiologist appointment yesterday, he FINALLY weighed in above his birth weight. Can't tell you how much more, because I have yet to find the time to look up the formula for converting kilograms to lbs and ounces, but I know he is over 6 lbs 13 oz, and his birth weight was 6 lbs 12 oz. The cardiologist was pleased with what he saw and we don't go back to see him until October 31. They are still watching the ASD (hole in his heart) and if it doesn't close in 4-6 months, we're looking at another surgery. They also continue to monitor his bicuspid aortic valve and there is a possibility we'll be looking at another surgery down the road to repair that, as well. However, his coarc repair continues to perform beautifully, and he passed all the tests they threw at him yesterday with flying colors.

We remain concerned about feeding issues, not because he isn't gaining, but because he isn't eating on his own yet. We continue to send the vast majority of his feedings down his NG tube. By now we had hoped to be off the NG tube entirely, so that is discouraging. His cardiologist wanted to give him until this next Tuesday and if things aren't improving, we'll be referred to a feeding specialist for an additional assessment.

Liam is a sweet baby who continues to sleep a lot, except in the middle of the night when Mama is up feeding him. Then he wants to throw a 2 hour party. As a result, Mama is exceedingly sleep deprived and has difficulty composing coherent sentences at various points in time during the day. This is also the reason for the lack of blog updates and pictures. We will post pictures as soon as Lisa can manage to achieve the mental capacity to learn how to do so (Heather, our photographer extraodinaire, has been kind enough to post all the ones that you see on the blog so far). Between pumping, doc appts, and being up with Jelly Bean a lot at night, blogging has definitely occupied the lowest priority slot in our house.

Lisa continues to recover from her C-section (actually, it was the speediest recovery known to mankind). Unfortunately, it seems that she is now paying for the fast recovery by being worn out over the smallest exertion, but she has decided she has no choice but to suck it up and keep going. ;) Bill is now back at work and trying to concentrate on work-related things when his mind is often more focused on what's going on at home. Jami, Liam's oldest sister, has been kind enough to offer a ton of help. She's been home since the day before Liam was born and has been WONDERFULLY helpful in all sorts of ways. We're sure we would have lost our minds by now without her.

Overall, we're doing well, and we extend many, many thank yous to our kind church family and neighbors for keeping us in meals for the past week!! We honestly don't know what we'd do without everyone's help, support, and prayers!

In Christ,
Bill and Lisa

Coming home!!!!!!!!!!!

2007-08-25T13:47:00.001-05:00

WE *** ARE *** COMING *** HOME *** TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

But we aren't excited about it or anything... ;)

In Christ,
Bill and Lisa

Friday p.m....

2007-08-24T21:12:00.000-05:00

Liam passed his hearing screen!!! Yahoo!!! One less thing to worry about!

The attending cardiologist told us that if we wanted Liam to go home this weekend, we needed to put the NG tube back in to ensure we can get him all the calories at each feed. So, Lisa learned how to put a tube down Liam's nose and into his stomach (which was surprisingly easy, though I doubt Liam is a big fan of the process!). He is ready to go home now as soon as he proves to us that he can fatten himself up a little. We hope that at least by Sunday afternoon, we will find ourselves at home with him at last.

Have I mentioned how cute he is lately? What a handsome little guy! He has all the nurses wrapped around his little finger. I hope when I get home for good I can post lots of pictures!

In Christ,
Bill and Lisa

Friday morning...

2007-08-24T11:00:00.000-05:00

2 steps forward, 1 step back. This morning before I left for breakfast, the nurse warned me that they would probably be putting Liam's NG tube back in. They were waiting on the cardiologist to do rounds to see what she would decide. He wouldn't take complete feeds overnight, and they want to ensure he's getting everything he can get. She said he's not likely to need to come home on the NG tube, but they'd leave it in until he's discharged. It's disappointing to think of him having to go through all that again.

They were doing the TN hearing screening test when I left and I decided I needed to go take a break in case he didn't pass, just to be in a better frame of mind to hear bad news about his results.

This afternoon I'll post an update regarding his hearing test results and NG tube.

In Christ,
Lisa

Thursday update...

2007-08-23T21:49:00.001-05:00

It's been a crazy day. I'm trying hard to be patient with all the different docs and nurses who are involved in Liam's care, but today it was a challenge. This morning, it looked like we were set to be discharged. Liam hit all his feeding goals late yesterday and overnight and when he pulled out his NG tube overnight, the night nurse left it alone and said they would probably remove it entirely this morning. The morning nurse, med student, and resident who came in early this morning all started preparing me for a discharge today, pending the opinion of the cardiologist.

When the cardiologist came by, she told me that Liam had lost weight. Since he was hitting all of his feeding goals, she said she wanted to increase the fortifier in his breast milk. I said, "What fortifier?" Turns out she had ordered a fortifier 48 hours ago that was to be added to the breast milk with every feeding and no one ever followed through on it, leading Liam's weight to start dropping. I wasn't even aware it had been ordered. So, we are here in the hospital for another 48 hours to give Liam a chance to gain back what he lost. The cardiologist was very frustrated with the entire situation, and arranged almost immediately for us to be moved over to the regular cardiology unit. We had been on cardiac overflow, which is actually an oncology unit, and the nurses just didn't seem to know how to manage Liam's care. I noticed an immediate improvement in nursing care when we moved over to the regular cardiology floor. It just felt like we were suddenly all speaking the same language.

Please pray we are able to go home in the next 48 hours. Sarah is having a tough time dealing with Mama being gone so long, and Mama is really homesick, too.

Some good news, though: They did another heart echo today and found the pressures they were so concerned about last week were "dramatically improved." Additionally, the coarc repair continues to look beautiful, and some of the growth they wanted to see in certain areas of Liam's heart is starting to happen. :):):) We were all very happy to hear this!!!! Please pray we will continue to see improvements in Liam's heart as he grows.

In Christ,
Bill and Lisa

The Serenity Prayer seems very appropriate tonight: "God, please grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

Wednesday update...

2007-08-22T14:15:00.000-05:00

Well, we've been told that the only thing keeping Liam in the hospital at this point are his feeding issues. Dr. Liske, his regular cardiologist, says Liam is acting like a typical cardiac baby: He's just a sleepy eater. All the other treatment team members say the same thing. Please pray the feeding hurdle is overcome soon so we can bring our baby boy home!

In Christ,
Bill and Lisa

Tuesday evening...

2007-08-21T16:49:00.000-05:00

Liam successfully breastfed for about 25 minutes today and the lactation consultant was thrilled with his progress. :):):) We haven't yet heard a plan for when they will be ready to let him come home, but we're beginning to think it won't be much longer...

In Christ,
Bill and Lisa

Tuesday afternoon...

2007-08-21T13:00:00.000-05:00

We have graduated to the cardiac unit!! Yahoo!!!!!

In Christ,
Bill and Lisa

Tuesday update...

2007-08-21T10:36:00.001-05:00

Sorry we missed posting yesterday. It was a busy day. They moved Liam to another part of the PCCU because there are no beds on the cardiac unit. It may be that he'll be discharged for home straight from PCCU. We were also working on feeding. The speech therapist and Lisa's mom are the only ones who have been successful getting Liam to drink from the bottle. We told Lisa's mom she couldn't go home since she seems to have the magic touch, but she is set to board a plane this afternoon. We sure will miss all the help, love, and support she offered to us through all of this. We're calling in lactation this afternoon to help get Liam started breastfeeding, so we'll see how that goes. He'll have to be eating better on his own before he can come home, but he really is improving his bottle-feeding skills, so we hope to bring him home by the end of this week!!!

Liam is off the vent, off oxygen, and doing great overall. It is such a relief to see him nearly "tubeless" (he only has the NG tube for feeding plus his wires that link him to the monitors at this point). Lisa hopes to post pictures later, but not making any promises since life is kind of crazy right now traveling to and from the hospital.

Thanks so much for your ongoing prayers. Please continue to pray for strength for Liam's family and for ongoing healing for Liam...

In Christ,
Bill and Lisa

Sunday update...

2007-08-19T21:56:00.000-05:00

We are happy to report that Liam was extubated today around 10 a.m. and is still doing well 12 hours later at 10 p.m. Sunday night. If all goes well overnight, Liam will move to the cardiac unit tomorrow.

We were both so happy to get to hold him. Until today, Bill and Lisa had only held Liam for 2 hours each. All Lisa did today was hold Liam. It was great!! :):):):):):)

Lisa tried to give Liam a bottle, but he didn't want anything to do with that. The nurses will continue to try to feed him every 3 hours tonight. If he still won't eat, speech therapy will come in tomorrow to work with him on "suck and swallow." No one is terribly concerned about his refusal to take a bottle yet, because he was on a vent for so many days. We know his throat is sore and we also know that he doesn't want one more thing crammed in his mouth. They expect that it will just take a little extra work to get him accustomed to bottle feeds, and then we'll work on breast feeding.

Thanks so much for your ongoing prayers and support...
In Christ,
Bill and Lisa

Saturday update...

2007-08-18T21:57:00.000-05:00

They have weaned Liam down to an 8 on the vent, which is where they normally try to extubate. They have given him steroids today to treat his airway, and they plan to run CPAP trials throughout the night and then attempt to extubate again in the morning.

More tomorrow...

In Christ,
Bill and Lisa

Friday night update & bronchoscopy results...

2007-08-17T22:27:00.000-05:00

The bronchoscopy showed that there are three separate tiny issues (can't recall what each one is called) that taken one by one wouldn't really have caused the extubation failure. However, the ENT thinks that all added together, they may have contributed to it. They are treating Liam with steroids to try to heal his trachea and reduce some swelling and will try to extubate again in 24-48 hours. We are waiting to see when they will start CPAP trials again, which may be as soon as overnight tonight.

Hanging in there...
In Christ,
Bill and Lisa

Friday morning update...

2007-08-17T10:10:00.000-05:00

Ok, so now all the docs have stopped saying, "This is not uncommon." Liam is scheduled for a bronchoscopy at noon today, which needs to be done in the operating room. That is where they put a tiny camera down his throat to examine his trachea and windpipe to see what's causing the airway to be narrow. It will be done by an ear, nose, and throat doc (ENT). The plan today is to do the bronchoscopy and get a diagnosis and treatment plan. No one is talking about extubating anytime until after this procedure is done and we know what (if anything) caused the problems on Wednesday, which makes perfect sense. The ENT's resident came in to have me sign the consent forms and said not to count on it happening at noon, so I'm going to wait to update the blog again until we have the report back from the ENT (unless something weird happens).

In Christ,
Lisa

Thursday night update...

2007-08-16T22:01:00.001-05:00

We will be glad to say goodbye to today! Lisa escaped to Target for a couple of hours tonight to find some cheap post-pregnancy clothes that actually fit so she doesn't have to keep doing laundry in the PCCU. We're told if you're doing laundry in the PCCU, it makes you real PCCU parents. ;) Bill is doing ok, but we're both tired and stressed.

We got news this evening that the CAT scan showed that Liam's trachea is narrow. That could account for the problems extubating him yesterday. The plan for tonight is to let him continue to rest, and the docs hope to get a 3D CAT scan tomorrow so they can diagnose whatever is going on with the trachea. It is possible that it's just swollen from all the tubes/trauma, etc. However, it's the closest we've been to an explanation so far. Since no one has said anything about brain problems, we're assuming that has been ruled out. We'll get that clarified tomorrow with the docs.

They have also sent a sample of secretions from Liam's mouth to the lab for analysis. There is a slight chance he may have an infection that is contributing to his problems. Those results won't be back for 24-48 hours. He doesn't have a fever, so if it's an infection, they are catching it really early, which is great.

Liam had an NG tube placed this afternoon and is now getting breast milk. YAHOO!! Finally, Lisa can do something for him that the docs can't do!!

We continue to hang in there and remain steadfast in our faith that all of this is bringing glory to God. Thank you for prayers, comments, calls, etc etc etc. We are getting all of your messages, even if we can't answer the phone or get back to you right away, and we greatly appreciate the support!

In Christ,
Bill and Lisa

Thursday afternoon update...

2007-08-16T14:48:00.000-05:00

Rough day. Liam continues to be stable as long as he is on the vent, but they decided to get a CAT scan of his brain and chest to see if any "structural abnormalities" might account for the failed extubation yesterday. There is also a slight concern he might be developing an infection, so they sent some lab samples off this morning and we are waiting for that news. So, we are waiting and it is turning into a very long day.

Because he has been on the vent so long and they haven't been able to start bottle feedings, they placed an NG tube in his nose earlier that will allow them to start dripping breast milk into his tummy (well, actually, they will drop it right in to his intestine). We're thankful he'll start getting great nutrition and some immunity protection, too.

Please pray we are able to turn this corner very soon and can get back on a more direct road to recovery.

In Christ,
Bill and Lisa

Thursday morning update...

2007-08-16T09:03:00.000-05:00

Liam is 7 days old today!!! :)

He had a good night, and he continues to be very stable on the vent. They have turned his vent setting down in the hopes they can start testing him later to see if they can extubate later today. This morning he is awake and alert and looking around the room a lot. He keeps looking at me with this confused look on his face, like "Do I know you from somewhere?" I think we're doing better with pain control now, since the nurses and I have learning the the signs he shows when he is uncomfortable.

Thanks for all your posts--I love reading them!

In Christ,
Lisa

Wednesday evening update...

2007-08-15T18:29:00.000-05:00

Unfortunately, Liam didn't do so well on the C-Pap, so they had to put him back on the ventilator around 5 p.m. this afternoon. His first blood gas that they took after putting him on the vent again came back looking much better, so they want to give him a chance to rest on the vent a while and will start weaning him off tomorrow again. Once again, they say it is not uncommon for this to happen, so we're trying to keep a stiff upper lip and give Liam the time he needs to recover.

Please pray the second time is the charm and he is able to come off the vent for good tomorrow.

In Christ,
Bill and Lisa

Wednesday afternoon update...

2007-08-15T13:52:00.001-05:00

Just wanted to pop on and share the good news that Liam was taken off the ventilator about 2 hours ago. They did it while I was at my doc appt getting staples out, but called me while Bill and I were at lunch to say Liam wasn't doing as well as they had hoped. Though he did fine on the C-Pap trials before they extubated him, he decided to be lazy and not breathe as well by himself once they extubated him. So, they have put him on the C-Pap as a step-down from the vent. The good news, though, is that he doesn't have a tube down his throat, and he no longer has a tube down his nose, either. He is much happier now than he was this morning.

I think this morning has been the hardest morning for me, because they had to bring him off the sedation to ensure he was ready to be extubated. However, when they did that he became more aware that there was a tube down his throat, and he just seemed to be wiggling around a lot and not at all happy to wake up to being on the vent (who would, though?). I was REALLY glad when they took him off the vent, even if he does have to use the C-Pap to remind him to breathe now and then. By the way, they say it's not at all uncommon to have to wean cardiac babies from a vent to the C-Pap, so it's nothing to be concerned about.

There is a small chance that if he doesn't continue to improve, they'll have to put him back on the vent. Please pray this doesn't happen.

In Christ,
Lisa

Wednesday morning update...

2007-08-15T06:50:00.000-05:00

First, if you are looking for the great pics of Liam with his eyes open, this post will kick them off the front page of the blog. To find them, look over in the right column under the archives, and click on the "Liam and Mommy" link. That should take you right to them.

OK, now for the update. It's nearly 7 a.m. CST and Liam is awake and looking around. He is mainly breathing on his own, but is still on the vent. They did a chest X-ray around 5 a.m. and discovered he has some fluid on his lungs, so they continue to treat him with diuretics to get rid of that. He can't have fluid on his lungs when they extubate him. So, he will probably remain on the vent through the morning and early afternoon. Maybe we can get him off of it by this evening.

His nurse said not to worry--this is a normal thing that they see a lot post-surgery in cardiac babies (and no, having fluid on the lungs isn't the same as having pneumonia). He swelled up quite a bit yesterday afternoon, which is his body's immune system response to surgery, so they've already been treating him with diuretics. He looks much less puffy this morning, and she said since he's responded well to the diuretics so far, they expect that to continue. They were able to take his catheter out this morning (yahoo!), and when they let him try breathing on his own by putting him on a C-Pap overnight, he did great.

So, please continue to pray that he comes off the vent ASAP. I'll keep you posted!

In Christ,
Bill and Lisa

Surgery Day--update #2

2007-08-14T21:51:00.000-05:00

Hi everybody! Liam continues to recover from his surgery, and he continues to be stable. We still haven't been able to extubate him, but they are weaning him from his ventilator, so the hope is that either they will extubate him overnight or they will do it first thing in the morning. The plan is that 4 hours after they take him off the ventilator, they will give him the first breast milk I pumped last week by bottle. His nurse tonight is the same nurse he had last night, and she said he had such a strong sucking reflex prior to surgery that they anticipate that there will be no problems transitioning him to the bottle and then eventually to the breast. This is music to my ears, as I'm already tired of pumping around the clock and would dearly love to be snuggling up to a hungry baby rather than a cold plastic pump, especially at 3 a.m.! ;)

Lisa will be with Liam at Vandy overnight since he hasn't been extubated, and we'll all breathe a huge sigh of relief when he is off the vent! I'll post again in the morning or early afternoon, as soon as time allows. I do have a doc appt tomorrow morning to get my surgery staples out, so that will give me a little less flexibility than I had today.

Continuing to ask for your unceasing prayers...
Bill and Lisa

Praise God!!!! Surgery is over and it went great!!!!!

2007-08-14T14:21:00.000-05:00

We are absolutely THRILLED to announce that the coarctation surgery is behind us and Liam did beautifully!! Many, many, many thanks and praises to God for bringing him safely this far!!!!
Liam went down to the OR right on time at 7 this morning, and at 8:20 they called to say they had started the surgery itself (it takes a long time to get cardiac babies hooked up to all the lines and under anesthesia). At about 9:20, we got the call that the surgery was over and Dr. Bischell was closing and would be out in a minute to talk to us. He came out a little while later and said he was able to go in from the left and it all worked out as planned. Liam didn't even need a transfusion during the surgery! Dr. Bischell is hopeful that maybe we can remove Liam from the ventilator late this afternoon and possibly get him started on breast milk by mouth (but from a tube or bottle) yet tonight. He was back in PCCU about an hour later, and we were able to get in to see him around 11:30. He has tubes coming out of every hole in his body except his eyes and ears, so he's pretty pitiful to look at right now, but he is stable and doing well. His nurse rarely leaves her computer monitor and just looks from him to the screens and back to her monitor, but she has been very helpful to us in terms of answering questions.

It's now 2:30, and he continues to be stable. He hasn't opened his beautiful blue eyes yet, and at the moment they are trying to increase his blood pressure a little. He has started to swell a bit. All of this is very normal for a post-cardiac surgery newborn. Oh, and we did find out they had to give him a little blood while he was in the recovery room, but he didn't have a complete transfusion. Again, very normal.

So for now, we continue to watch and wait! Momma, Daddy, and Jami are all hanging in there and doing well. Please continue to pray!!! We aren't through the woods yet, but things continue to progress normally. The next big goal is to get him off the ventilator. Because being on the vent brings its own risks, we will all breath a HUGE sigh of relief when that is gone.

In Christ,
Bill and Lisa

P.S. Heather was kind enough to drive to Vandy yesterday and shoot some more pictures of Liam and his Momma--scroll down to see them!

Liam & Mommy

2007-08-14T13:32:00.001-05:00

Here are some pictures of Liam and his mommy, taken Monday, Aug. 13, 2007 in the PCCU.

Info about Surgery on Tuesday, August 14

2007-08-13T22:21:00.000-05:00

Yes, yes, we know. You've been checking the blog all day for this information and we haven't updated it. We didn't get to the cardiac surgeon until late today, so we're posting it as quickly as we could after eating, saying good night to Liam, and driving back home. We appreciate your patience, as today has been a very, very long day for us.

Dr. Bischell will be doing coarctation arch repair surgery on Liam at 7 a.m. His plan is to go in on Liam's left side and try to avoid an open heart procedure, but he might have to convert to an open heart approach during the surgery. The surgery should last around 3-4 hours. Our plan is to update the blog from the hospital tomorrow as quickly as possible. Liam was moved from the NICU to PCCU this a.m., which threw off our day, because Lisa ended up meeting with a new team of doctors and familiarizing herself with the new surroundings the better part of the day while we waited for Dr. Bischell to meet with us. He was moved to PCCU so the staff could work with him there today since that is the team that will work with him after the heart surgery.

Lisa was released from the hospital today and is doing well, but very tired. It was difficult to drive away from the hospital without a baby in the back seat, so it was a day with sad and difficult moments despite all of the good news we've been receiving.

Please pray that God will guide the docs and nurses tomorrow and bless them with an extra dose of wisdom as they care for Liam! More when we know more...

In Christ,
Bill and Lisa

More news...

2007-08-12T11:21:00.000-05:00

Hi everyone! I have found the business center in the NICU that they let families use, so now I can start posting again! Many thanks to Jami and Heather for updating the blog on Thursday and getting the pics up so fast!

First, a couple of corrections and clarifications:

1. Liam was acutally 19 inches long at birth, not 17.
2. They did end up finding 2 VSDs (holes in his heart). One, the largest, looked like it was in the process of closing, and Dr. Liske thinks the other hole will close, as well. They will continue to monitor them.
3. They are not concerned about the left ventricle, as was initially reported. It ended up measuring just inside the normal range.
4. The primary areas of concern are the coarctation of the aorta, which means his aorta is too narrow in one spot, and a bicuspid aortic valve. The only one that requires immediate attention is the coarctation.
5. There is a chance that Liam will still end up needing open-heart surgery. Dr. Liske is waiting to confer with the surgeon before they make a final decision, and there is a thought that it may end up being an open-heart surgery.

Updates:

1. It appears that they are making every effort to set up surgery with Dr. Bischell for this coming Tuesday. We are hopeful that it will be Dr. Bischell, as he is the HLHS surgeon who trained at Children's Hospital Boston, the leader in the nation in treating pediatric cardiology problems.
2. Liam continues to hold his own and is stable. The medication they are giving him to keep the duct open is making him quite sleepy, so he hasn't been very alert.
3. Have I mentioned what a BEAUTIFUL baby he is? :):):)
4. Some have been asking about Lisa's health and recovery. I'm doing great and have had a very easy recovery, all things considered. More pain than with my first C-section, but just cramping, not incision pain, so it's been easy to get over to see Liam. I'll be released from the hospital tomorrow.
5. Emotionally, the entire family is doing shockingly well. We attribute this to the many, many prayers being said on our behalf every day. We know God is giving us the strength to face what lies ahead.

Thank you, thank you, thank you for all the messages you've been posting, and for the phone calls and visits. It has helped us tremendously to know we have so much love and support.

Prayer requests for this week:

1. PRAISE for Liam's birth and the fantastic news that we are facing a less severe scenario than originally thought.
2. PRAISE for the wonderful docs and nurses at Vandy. We have been so pleased overall with the care we've received so far. In particular, Lisa's nurses deserve a huge pat on the back--they've been extraordinary.
2. PRAISE for all the friends and family that have been helping us so much. Extra special thank yous to Jami, Grandma, and Heather. Heather, the photos you've taken have been spectacular, and we are so thankful to you for sitting with Liam when we haven't been able to.
(Honestly, our list of PRAISES at this point could go on endlessly, so I think I'll just stop there!)
3. Please pray that Liam will not need open-heart surgery. If he does, that increases the chances of so many complications versus being able to go in from the left side to correct the coarctation.
4. Please pray that God will continue to guide and direct the doctors and treatment team members working with Liam.
5. Please pray that God will give Liam's entire family the strength, courage, and wisdom to face what lies ahead.

Keep praying! In Christ,
Bill and Lisa

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessolonians 5:16-18

Pictures of Liam

2007-08-11T14:53:00.000-05:00

Here are pictures of Liam that we knew you would want to see~
The first four are on Thursday, Liam's birthday, and the rest were taken Friday night.

Big sisters seeing Liam for the first time

Liam in the NICUJami with Liam; Nurses bustle around caring for Liam Liam holding Jami's finger
Dad & Jami with Liam
Liam squeezing Jami & Heather's fingers

Liam has arrived! Results of Echo!

2007-08-09T21:45:00.000-05:00

Liam was born at 10:46 a.m. He weighed 6lbs and 12oz and was 19 inches long. His initial apgar score was 4 and the second was 7. He had some difficulty getting started breathing, but is doing just fine now. His vital signs all look great, and so far the only thing that has been done is to give him the medication to keep his duct open.

The initial echo results were great! Dr. Liske will review the pictures and continue to monitor Liam's heart with further echos, but for now, here is what we know:

* Liam does have coarctation of the aorta and will need heart surgery early to middle of next week to correct the problem. It is the less severe coarctation, so we hope that open-heart surgery won't be needed.
*Liam does not have HLHS!!!!!!
*Liam does not have a VSD!!!!!
*The three areas of concern will be:
~A bicuspid aortic valve
~Small left ventricle
~Small subaortic area

These will be monitored over the next few weeks and months to see if additional surgeries are needed, but the docs are hopeful that these things will not require an immediate surgery, and perhaps can be tolerated over Liam's life.

Please keep praying, and we will post more as we can.
In Christ,
Bill & Lisa

C-Section tomorrow!!

2007-08-08T22:42:00.000-05:00

Well, the time has finally arrived to welcome Liam to the world! Thank you so much for all the prayers! It's hard to believe that around 19 weeks ago we launched this blog and we have now had over 6000 hits. You can't imagine how grateful we are that we have so many people posting to us, e-mailing, calling, sending cards, and (most of all) praying for us!

Our family has survived the "limbo" time better than any of us ever expected. As counselors, both Bill and I know that the time before you find out exactly what you are dealing with is often the hardest time of all. At least after Liam has arrived, we will be working on a treatment plan with his cardiology team and the hospital.

We will update the blog as soon as we can tomorrow. We're hoping to update it once after he is born and another time after we get the echo results, which we are hoping to have back by tomorrow evening. However, we found out that Wifi access in the area where Lisa will be is spotty at best. Therefore, if the blog isn't updated until tomorrow night, don't assume the worst. It most likely means that we are simply experiencing technical difficulties (or that Lisa is drugged out of her mind on pain meds and Bill is busy bonding with his son in the NICU).

No matter what the future holds, we are confident that God will be glorified through Liam's life. Keep those prayers coming!!

In Christ,
Bill and Lisa

God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. Selah. There is a river whose streams make glad the city of God, the holy place where the Most High dwells. God is within her, she will not fall; God will help her at break of day. Nations are in uproar, kingdoms fall; he lifts his voice, the earth melts. The LORD Almighty is with us; the God of Jacob is our fortress. Selah.

Psalm 46:1-7

This week's prayer requests:

1. PRAISE that we are having Liam at a time in medicine when so much is known about how to treat his problems.
2. For strength, guidance, and wisdom as we face treatment choices and decisions.
3. For God to guide the hands and minds of the docs and treatment teams working with Lisa and Liam this week.
4. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Tests, tests, and more tests!

2007-07-31T14:41:00.000-05:00

Liam passed his non-stress test uneventfully on Friday, and he passed his biophysical profile again on Monday. We go back to the OB on Thursday for another non-stress test, but provided all continues to go well, we are still on track for an August 9 C-section. It is expected that he will pass all these tests with flying colors, because Dr. Liske said his heart problems don't present a problem until he is born.

Lisa is doing well, but is tired because she's not sleeping well at night. Her last day at work is Friday, August 3. Friends and co-workers at her workplace have donated as much sick time to her as the university will allow her to receive, and you can't even imagine how blessed we feel at this turn of events. We were stunned at the outpouring of support within a mere 24 hours of making our need known.

This week's prayer requests:

1. PRAISE that we are having Liam at a time in medicine when so much is known about how to treat his problems.
2. PRAISE that Lisa's co-workers and friends have been so generous with their paid sick leave donations.
3. PRAISE for continued good health for Lisa during this pregnancy.
4. For complete healing for Liam during this pregnancy (we continue to ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

9 days and counting,
Bill and Lisa

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened." Matthew 7:7-8

Posting a little late this week!

2007-07-25T09:42:00.000-05:00

Sorry I missed the Tuesday update. I wanted to wait and post today. Our OB ordered a biophysical profile yesterday to check on Liam because of that increased level of amniotic fluid they found last week, so I thought I'd wait and post after that. Liam had 30 minutes to do several things (they checked muscle tone, practice breathing, movement, and amniotic fluid level). He scored a perfect score (8 out of 8) in 8 minutes. What a guy! And the amniotic fluid level was back down to normal yesterday, too.

This week's prayer requests:

1. PRAISE that we are having Liam at a time in medicine when so much is known about how to treat his problems.
2. PRAISE that Liam cooperated and scored so well on his BPP!
3. PRAISE for continued good health for Lisa during this pregnancy.
4. For complete healing for Liam during this pregnancy (we continue to ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Take care,
Lisa

I have set the Lord always before me. Because He is at my right hand, I will not be shaken. Psalm 16:8
(I should note that this is the goal I'm shooting for, not where I am!)

Updates--sorry it's been so long!

2007-07-19T09:41:00.000-05:00

Hi everyone! Sorry we missed updating last Tuesday. Last week, Bill was in Honduras on a mission trip, and Lisa came down with a really weird virus that made it difficult to type (or do anything else that required moving a muscle or joint!). Thankfully, Bill is back and Lisa is well again. We delayed posting because we knew we were doing that gestational age dating ultrasound yesterday and wanted to share those results with you.

Yesterday Lisa was 35 weeks and 6 days. The ultrasound measurements indicated Lisa was 35 weeks and 6 days. It doesn't get more perfect than that! Liam does have a head measurement in the 75-90th percentile range, but they don't get concerned that something is wrong with a baby's brain or head until the measurement falls over the 90th percentile. All other measurements she could get were right on target. Lisa has slightly more amniotic fluid than normal, but they said that is normal given the congenital heart defects, and it's so slightly elevated that it probably won't present any problems. It was ironic that she couldn't get heart measurements because of the way he was positioned. He was face down, so we didn't get a peek at his face, either, though she pointed out that there is hair growing off the back of his head. So, we guess he won't be born bald. ;) The routine OB visit went fine yesterday, as well, so we are still on target for an August 9 c-section date.

This week's prayer requests:

1. PRAISE that we are having Liam at a time in medicine when so much is known about how to treat his problems.
2. PRAISE that Liam cooperated and was in a good position for the ultrasound so the proper measurements could be taken.
3. PRAISE for continued good health for Lisa during this pregnancy.
4. For complete healing for Liam during this pregnancy (we continue to ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Take care,
Bill and Lisa

Weekly update

2007-07-03T09:56:00.000-05:00

First of all, we want to send out a huge thank you to everyone who has called, posted a comment to the blog, or e-mailed with their prayers and support. You have no idea how much easier that makes it for us!

At the appointment last week with Dr. Liske, he came up with a gestational age that was 36 weeks rather than 33 weeks. He wasn't terribly concerned about it, in part because it is hard to determine a gestational age this late in a pregnancy, but wants to make sure we are dating this baby as accurately as possible. So, on July 18, we're doing an ultrasound to help clear up the confusion. Dr. Liske was only able to get a head measurement, and they usually use several body measurements when they determine gestational age. I am measuring right on target at the OB's office each visit, so I'm not overly concerned about this, but clearly if we're comparing Liam's heart measurements to the wrong chart, we need to know that. It would make a difference in terms of whether or not he has HLHS since he's borderline for it right now.

I need to clarify something from last Thursday's post: Shone's Syndrome is used to describe a series of problems with the LEFT side of a baby's heart. I didn't specify that it only affects the left side last week. A baby with Shone's doesn't face as severe a situation as a baby with HLHS, but the problems remain serious and similar in terms of the structures within the heart that are affected.

This week's prayer requests:

1. PRAISE that we are having Liam at a time in medicine when so much is known about how to treat his problems. Just a scant twenty years ago, Liam would have been released from the hospital with everyone thinking he was a healthy newborn and would have died within the first week or two of life, probably termed death by SIDS.
2. PRAISE that we are blessed with Dr. Spetalnick and Dr. Liske, who work well together as a team and are even willing to communicate between appointments via phone or e-mail to answer our 10,000 annoying questions.
3. PRAISE that Liam cooperated and was in a good position for Dr. Liske to see his heart clearly.
4. For complete healing for our son during this pregnancy (we continue to ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

To our Maple Hill church family: You have blessed us tremendously with your constant outpouring of support and offers of help in the coming months. Words simply do not exist that would adequately allow us to express our thanks to each of you.

Lisa

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18

2nd Fetal Heart Echocardiogram Results

2007-06-28T16:49:00.000-05:00

Whew! What a LONG day! I'm going to do my best to translate what the doc said, but it was hard to follow him at times! We were glad when he noted right off the bat that Liam was in the best possible position for the echo, and he was asleep, so he was able to get really good pictures of the most important things. The first thing he said when he came back into the room after interpreting the echo results was that he was encouraged.

If you'll recall the last echo showed Liam had borderline HLHS with small measurements on the mitral valve, aortic valve, a possible narrowing of the aorta (which might lead to coarctation of the aorta), and a possible VSD (hole in his heart). Today we were looking to see if any of these problems had corrected themselves. The primary thing the cardiologist wanted to see was that the left side of Liam's heart had continued to grow and develop.

So, the first thing he noted was that the left side of the heart still has both chambers (so we still have a 4-chamber heart). This is good, because if it hadn't grown or if one or both chambers had closed, we would have a full-blown case of HLHS. We are still looking at borderline HLHS, but now we've been given only a 30% chance that Liam will have full-blown HLHS at birth. The left side of his heart is still smaller than the right side, but is functioning.

His mitral valve is currently measuring 7 mm, and at birth, they want it to be at least 8mm. His aortic valve is currently measuring 4 mm, and at birth, they want it to be at least 4.5-5.0 mm. He said it is entirely possible that they can achieve that kind of growth over the next 6 weeks. This places Liam at the 5th percentile for both valves. That isn't ideal, but if they continue to grow, they might be functional at birth. The leaflets on his aortic valve are opening and closing normally, which is a good sign. IF these valves are functioning and measuring within acceptable limits at birth, the cardiologist will check them periodically to ensure they are functioning as Liam gets older. If they fail, they will need to be replaced at some point.

On to the aorta: We are most likely looking at a coarctation of the aorta (70% chance), and this would have to be fixed surgically within the first week of life. The best case scenario would be that they would be able to go in from Liam's side to fix the aorta and not have to put him on a bypass machine. If it's a more severe coarctation, they will have to do open heart surgery. We won't know until he's born how bad the problem is, because you can't see part of the aorta that might be a problem on a fetal heart echo. You have to wait and do an echo a few hours after he's born to get good pictures of that area of his heart.

The VSD (hole in his heart) has disappeared. At the last echo, he couldn't tell if there was a VSD or not. Today, he couldn't see any. He did say this only rules out a large VSD--a small or medium VSD might not be visible in a fetal heart echo.

Liam's heart problems now resemble a condition known as Shone's Syndrome much more than HLHS. That's a term used when a baby's heart is showing multiple issues but doesn't fit criteria for HLHS or another congenital heart defect. We won't know the extent of what Liam will need until he is born, but we do know we are looking at some type of heart surgery in the first week of his life (unless God intercedes and performs a miracle in the next 6 weeks, of course!).

The plan at this point is that Lisa will get to spend a few minutes cuddling with Liam in the OR right after the C-section, and then he will go with Bill and Dr. Liske's cardiology team to the NICU at VUMC. As soon as he's stable, he will be moved to the Vanderbilt Children's Hospital NICU, where he will have various tests to determine his exact diagnosis. Lisa will continue to recover at VUMC. Lisa is NOT happy about learning this, but it can't be helped. This means that Lisa will not see Liam for probably 24 hours after he leaves the OR. Granted, the two hospitals are connected by a walkway, but we joked that a golf cart was really called for to get from Lisa's room to the NICU at VCH.

Although we realize that it was necessary to tour the NICU to prepare ourselves for what lies ahead, it was a very difficult tour to take for both Bill and Lisa. We were actually doing pretty good after the echo appointment until we toured the NICU and all the areas we would be moving to and from and between during the first couple of weeks this baby is alive. Frankly, that was just depressing and overwhelming.

We are doing ok at the moment. We will post more updates as we remember more information. It's a lot to absorb and then try to explain to others, but hopefully we've made it as clear to you as it is to us. Please keep the prayers coming--we know God is providing the strength we need to both of us as we deal with each "next step" in this process.

Bill and Lisa

Tomorrow is our fetal echo...

2007-06-27T10:26:00.000-05:00

We've been waiting since mid-April for tomorrow to come, and now I don't know if I'm looking forward to it or dreading it. I guess both. We are also supposed to be getting a tour of the NICU, which I know for sure I'm dreading! We are hoping and praying that God has healed Liam's heart. We will post an update to the blog as soon as we are able to do so tomorrow!

Bill's dad is recovering at home and is doing much better now. It appears as though the heart attack caused very little (if any) damage, and there were no blockages that required surgery. Thanks to all of you who expressed concern and prayed for him!

Updated prayer request for this week:

1. PRAISE that God has given us the technology to see what Liam's heart looks like.
2. PRAISE that God has given us the strength to make it this far.
3. PRAISE that Lisa continues to have good maternal health during this pregnancy.
4. PRAISE that Bill's father is feeling better and recovering at home.
5. That Liam will cooperate and be in a good position so the doctor can see his heart clearly.
6. That God will give us the strength to hear the update the doctor has to share with us.

Once again, we find ourselves overwhelmed by the number of people who are praying for us. Thank you all so much!
Bill and Lisa

"For the Lord is good and His love endures forever; His faithfulness continues through all generations." - Psalm 100:5

We have a C-Section date!

2007-06-20T09:55:00.002-05:00

Wow! What happy news! Liam will be here August 9. It's so nice to have an official date when we know we will KNOW exactly what we're facing. I guess that's one advantage to knowing in advance you'll have a C-section: There's reduced worry about going into labor at an inconvenient time (although clearly that could still happen) and you can prepare in advance for your baby's arrival.

It has been an extra-crazy week here so far, which is why I didn't post an update yesterday. Those of you who are praying for us, please add Bill's dad to the list. He was admitted to the hospital on Friday night with pneumonia and has since had a heart attack and congestive heart failure. He seemed to be doing better yesterday and we are hoping he was moved out of ICU to a private room last night. I'm hoping to go check on him in a little while. He will be having more tests and procedures tomorrow to determine how much damage the heart attack did to his heart.

Next week is a big week for us: We will be having the 34 week fetal echocardiogram done at the pediatric cardiology lab on June 28. We are really looking forward to hearing how Liam's little heart is developing, and we are hoping and praying for good results!

This week's prayer requests:

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. PRAISE that Bill's dad appears to be stablizing and recovering.
4. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa. This continues to be a big problem, especially for Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Thanks,
Bill and Lisa

Celebrating our anniversary today!

2007-06-12T14:57:00.000-05:00

No new or exciting news in the Jelly Bean department, and today we are taking time out to celebrate our 8th wedding anniversary. Hard to believe it's been 8 years!

We will hold over the same prayer requests from last week to today:

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. PRAISE that we received the 2nd opinion report so quickly and that it looks more hopeful.
4. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa. This continues to be a big problem, especially for Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Thanks so much for your prayers,
Bill and Lisa

"My soul finds rest in God alone; my salvation comes from Him. He alone is my rock and my salvation; He is my fortress, I will never be shaken." Psalm 62:1-2

This week's update...

2007-06-06T15:54:00.000-05:00

There are only a couple of new things this week. We did receive the report Dr. Gomez-Fifer at University of Michigan sent to Dr. Liske after reviewing his fetal heart echo and report. We haven't yet consulted with her (I need to schedule a time and just haven't done so yet), so most of the report was over our heads. We were hopeful that it APPEARS (based on our EXTREMELY limited knowledge) that her measurements were slightly better than Dr. Liske's, so that was encouraging.

Our insurance company denied our request to pay for the phone consult (probably a couple of hundred dollars at the most), which is ironic since they would be willing to pay for a trip to MI, for Dr. Gomez-Fifer to do another fetal heart echo, and for an office visit with her (probably a few thousand dollars). What can I say? Insurance companies are funny. I'll call our case manager and talk to her, but I think it's a futile effort because of the way our policy is written.

This week's prayer requests:

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. PRAISE that we received the 2nd opinion report so quickly and that it looks more hopeful.
4. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa. This continues to be a big problem, especially for Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Thanks so much for your comments! They are so helpful and nice to read!
Bill and Lisa

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. Proverbs 3:5-6

OB appointment this morning

2007-05-30T12:14:00.000-05:00

I'm sorry I forgot to update the blog yesterday--the holiday weekend threw me off and I was thinking it was Monday. Oops!

I guess it was just as well, because I had an OB appointment this morning and now I can share the latest news. Liam's heart rate was fine this morning, and his Mama is measuring on target for where we are in the pregnancy (which will be 29 weeks this Thursday). We are looking at a C-section date somewhere around August 9 but the actual date is still up in the air.

Here are the updated prayer requests for the week. If we could ask you to pay special attention to #6, that would be great! Lisa is not sleeping well these days, which tends to mess up Bill's sleep, as well.

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. PRAISE that Lisa's gestational diabetes test results were normal.
3. PRAISE that we have a 2nd opinion doc now!
4. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa. This continues to be a big problem, especially for Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Thanks,
Lisa

We have a second opinion doc arranged!

2007-05-24T15:59:00.000-05:00

At the recommendation of our insurance company case manager (who is turning out to be a God-send!), I asked Dr. Liske to step in and try to secure a second opinion doctor for us. Within the space of an afternoon, he had accomplished what I've been trying to do for over a week. Too bad no one publishes a rule book for how to navigate the medical world! If I had known he could do that so fast, I'd have asked him to take care of it when I talked to him two weeks ago! ;) Oh well. Dr. Gomez-Fifer at University of Michigan will be working with us on a second opinion. So, you can cross that one off as yet another answered prayer and I'll keep you posted regarding what she tells us!

Lisa

"A rose by any other name..."

2007-05-23T10:10:00.000-05:00

We have chosen a name (FINALLY!). I think we'll reserve the right to change this if he doesn't "look" like his name when he's born, but we have decided to name our son William Evan. We'll call him Liam for short (pronounced like the actor Liam Neeson's name, but we AREN'T naming him after the actor).

Hopefully that'll help with the prayers at church, because it's difficult to watch grown men praying for "Jelly Bean," though everyone has been great for doing that! ;)

Bill and Lisa

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10